As I had told you all I have been seeina an actual M.S. specialist. He is a great neurologist and requested my records from every doctor I could think of. After going over and through test results and ridiculous amounts of notws, we discovered that there was no significant basis for a diagnosis of Multiple Sclerosis. Not only were all of my MRI scans clears, but there isn't any evidence of bands in my spinal fluid. There is some information missing, so I will be returning to one place to retrieve the full results reading, but I am very upset.
At this point he has done some testing of his own and knows this is not autoimmune. He doesn't want to do another spinal unless we can't get the full panel fro the lab that did the 2 I've had.
I'm told this is a good thing, but not knowing what the malfunction is can be worse than having a diagnosis 😔😒
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Fee09
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Fee09 So frustrating. I don't remember what your symptoms are, but by reading these posts over the last year, sometimes it may take a few years for plaques to show up on an MRI. I also wonder if anything shows up in a spinal tap if you aren't in an exacerbation.
I've was able to retrieve my Mri's from 2007 until 2015. He spinal in in 2013 was done while I was in a state of temporary paralysis. I have many of the symptoms of MS but there are a few that seem environmental. So we'll just see what happens now
I know exactly what you mean Fee09 . After 40 years of being told I have MS, by numerous neurologists, I went to an MS specialist and he said that I do not have MS. I have had, what many other neurologists called, 1 lesion for all of those years but nothing in my spinal fluid (spinal taps were done many, many years ago).
My outer left side of my body, from head to toes, has been numb for all those years, pain in the same area, awful fatigue, weakness on left side at times which causes me to walk like I was drunk, a feeling of water dripping down my leg, etc. Last September I got the worst achiness, all over my body for 8 days, no other symptoms. I had thought it was some kind of virus but after that long I decided to go to my doctor. My Primary doctor said that he thought it was a new attack (I had not had one for over 20 years). He gave me a round of steroids and it stopped in 2 days. I began having muscle spasms all over my body after that. A subsequent MRI showed at least 2 more lesions, per the neurologist that read the MRI.
My Primary doctor made me an appointment with an MS specialist.
When I finally Got to see him (it took 5 months to get in to see him) he wanted to wait to get the actual MRI's before he made any decision. I got another appointment for April, and got the actual MRI's. A few days before I went to the new appointment I had the same achiness all over my body (terrible achiness), I called the MS specialists office and got the nurse. I explained my symptoms and she says, "That is not symptoms associated with MS." So I explained what had happened back last September and how the steroids had stopped it. She again said it was not symptoms associated with MS and hung up. I called my Primary doctor and he prescribed a round of steroids and it stopped. I then went to my second appointment with the specialist and he looked at the MRI and said that I did not have MS. He said that the new lesions were "bright spots" and the older, larger one, well he just didn't know. I asked about all of my symptoms, over the 40 years, and he said that he had seen people with similar symptoms over the years and they never got worse or cause a disability, so don't worry! Really, don't worry! I was put on disability by my employer in 1991. They did not feel it was safe for me to be working around nuclear stuff when I was taking pain medications every day and my job required being in very hot areas when I took samples (every day) and that heat cause the fatigue and other weird neurological symptoms to come on.
I was shocked, confused and terribly depressed! This Tuesday I had an appointment with my Primary doctor and he was confused also. He said that he was treating me as though I had MS and would prescribed the appropriate medications to treat my symptoms. He said that if I wanted to find another specialist he would help me. I have decided to wait to see if I have any more "attacks", or whatever they are, in the future. I felt better after my appointment knowing that he would back me up and help me in any way that I wanted him to.
Sorry that this rant is so long but I needed to get it out, and your post just gave me the opportunity.
Morllyn , I am so disappointed on your behalf to be going through this. I can't remember if you mentioned where you've been seen, but is there any chance of being seen at an MS clinic?
It was an MS clinic, in Knoxville Tennessee. greaterexp , The doctor that I saw was what I had always thought of as a really good neurologist. He had been my husbands and sons Muscular Dystrophy clinic doctor, many years ago. He swapped specialties a few years back.
Well see the issue is only a lab tech actually said I had MS and my previous primary went along with it. I only found this out in the last 2 weeks after going over all my records. Every other doctor (neurologist, rheumatologist...etc) have said that it appears to be an enzyme or mineral imbalance.
Morlyn, thanks for explaining your situation. It certainly seems like something autoimmune is going on. All I can say is that people are not textbooks - just because we don't fit a particular standard pattern, doesn't mean we should be disregarded. Regarding your definite lesion ( it seems the 'bright spots' are now in dispute ? ) - I do know that a one off brain injury can cause long term fatigue, heat intolerance and a worsening of symptoms with both, besides long term stable symptoms. I was originally 'suspected Encephalitis' ( stiff neck, movement disorder etc ) before being signed off as 'functional symptoms' a year later. My standard brain MRI was clear, 2 days into symptoms and although white cell count and lymph nodes were up, EEG had slowed waves when taken a few months later ( should have been done during the 'acute ' phase but for some reason was not )and I was left with long term disabilities,they were disregarded in favour of a 'functional' diagnosis. Never had a lumbar puncture. No further tests to determine the cause of my long term disability. No physio. So I carried on, believing it was a 'one off' for 2 1/2 years until the first relapse, then another a year on. It seems that there is some correlation between post viral brain infection and MS :
My neck/C spine scan was clear last year. They haven't yet offered to rescan my brain. Since I have had 2 relapses with symptoms suggestive of cerebellum/brainstem dysfunction, I hope they will consider this in the future. As a patient with the 'functional' label, I have experienced much bias and rudeness/apathy from doctors, who seem to make the assumption that it means 'of psychological origin'. I am glad you have a good doc, who is keeping an open mind and will treat you with what works for you. It is a great shame that some people who will ultimately turn out to have neurological disease should have to forgo treatment and sustain further substancial damage before eventual diagnosis. x
Fee09 , my heart goes out to you. We all know how difficult it is to diagnose MS, but having answers for our big question as to what is going on is so important.
I hope and pray that this neurologist can finally pinpoint with accuracy just what is the cause of your symptoms, and then treat it.
I hope you realize that no matter what diagnosis you receive, you're one of us. We will all be watching for your updates.
Fee09 It must be aggravating to be out in limbo again. For a lot of us it is a relief to be told we have MS not because we want it, but because it's an answer. Hoping you get answers soon and that they're good ones.
Fee09 , I wish MS was the same for everyone and a simple test diagnosed it. I don't know if you have MS, but I do know how you are feeling. It took 9 years for me to be diagnosed. 2 years later, I was undiagnosed. 10 years later I was rediagnosed at an MS Clinic and told I'd had it all along. Last year I was told I'm SPMS now, only to have the MS diagnosis questioned again earlier this year. Last month the MS was confirmed AGAIN. Talk about an emotional rollercoaster! I hope and pray you get an answer. The unknown, to me, is far worse than any diagnosis. Sending you a hug 💕
This is how I feel. He is the MS specialist for my area, which I had never seen one until now. He and I were both confused as to how I was ever diagnosed to begin with. I hope to get some idea of what to do and to have since of a stable life
I think that "roller coaster" is something we all can say we share. I won't go into all the details, but I've had 35 vials of blood taken, 1 Mri for my ortho doc, 1 mri for the first neuro that just called and said "You've got MS, don't get upset you've had long life." My second neuro is at the UCSF MS clinic, and is pretty good. I've had 2 full sets of mri's of brain, cervical & Thoracic spine, without then with contrast dye. 20+ white spots in brain that have not changed size or shape, no new ones, He doesn't want to DX those yet. Lesions on Thoracic spine, T2-5 that he does feel are MS. Spinal tap was clear, nerve conduction tests all within normal limits. No real answers why I have many MS symptoms. Where's that one step test to diagnose? I'm so tired right now, this post would be all jumbled if it weren't for spell check.. All that in less than one year, I sure can understand your frustrations, Hang there and just do the best you can, Lynn.
Fee09 I am sorry about the rant above, and I am sorry I seemed to make this string of posts about me because it was about you. All I meant to say is that I know a little about how you feel.
I hope the specialist can help find the answers that will help you figure out what is causing your problems.
We are here for you morllyn, it's ok to vent frustrations. We pretty much have shared similar feelings. We have good 😊days and other😐Days. You have already been helpful to many with your supportive comments. 👍
I see a pattern with a lot of the post. One thing that I wish I could say is that there are any spots on my brain or anything abnormal in my spinal fluid. This is why I am so angry. How can any physician feel comfortable or confident giving anyone this type of dx without any Real evidence. I definitely have symptoms that go along the lines but none if the markers.
So now to start the search again. I will continue to keep you guys updated and let you know what we find out. You guys have been a great support.
Hi Fee, they have ruled out mechanical abnormalities ( disc/cord probs etc ) in your neck and spine ? MRI is good but not God - things can be missed. Physicians rely heavily on scan results as 'proof' and seem all too keen to dismiss symptoms without an obvious cause. Not useful to the patient, who is left in limbo, perhaps with long term symptoms/disability and often no medical support. I do hope you can have access to physio/medication, if you need them. Sending hugs, Angela x
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